Wurzel Tommy Banner tells us about his wife’s struggle with PSP.

Chris Banner has always been at her husband’s side. When Tommy and his fellow Wurzels perform she is never far away and that hasn’t changed.

She’s still there tapping her feet to the hits as the West Country legends perform the length and breadth of the country, but her mobility is suffering, as is her vision and speech.

Initially, she was diagnosed with Parkinson’s disease because the early symptoms are so similar, but this summer the couple, who live in Taunton, were given the news that it was PSP – Progressive Supranuclear Palsy – for which there is no cure.

However, Chris and Tommy – who himself fought prostate cancer just a few years ago – are determined to be positive knowing that research is under way to try and find a cure.

Tommy said: “It started in 2009. Chris has always had ear, nose and throat problems and we noticed her balance was bad. She was seen by an ear specialist who said it wasn’t anything to do with her ears and referred her to the neurology department.

“She had every scan under the sun and various neurology tests. As well as her balance being bad, we started to notice she was getting confused.”

Treatment for Parkinson’s disease began but gradually more tests eliminated the condition.

Tommy said: “PSP was suggested. We went to Frenchay in Bristol and it was confirmed.

“One of the main problems is that she falls backwards without warning and that is a classic sign of PSP.

“She has no warning and there’s nothing you can do about it which means she can hurt herself.”

Chris, 61, fell in the shower and damaged her vertebrae before the diagnosis but now a host of safety equipment is installed throughout their home in a bid to avoid further injury. “We have to watch her all the time,” said Tommy. “She is aware of what is happening but she has no warning that she is going to fall. Her speech is slurred and movement is slow.”

“Chris finds it frustrating because she was used to doing everything at 100 miles an hour. She has a walking aid and bombs around on that,” said Tommy.

“We say to her just concentrate on one thing at a time. ‘Just pretend you’re a man’, I say to her, as she always used to say to me men can’t multi-task. There isn’t a cure and that’s hard for me and the family.”

The family attended a PSP support group to find out more, and although there are only four PSP specialist nurses in the country, Tommy says they are getting fantastic support from the Parkinson’s disease specialists in Somerset. He is attending a course for carers with St John’s and has been referred to a local sitting service because he knows he cannot leave Chris alone now.

“It is scary because we don’t know what the future holds. We are staying positive and looking for a cure.

“We know it’s important to speak out – even now people come to me in the supermarket to thank me for speaking out when I had prostate cancer and they say without reading about what I was going through they would not have had the test, and this is why Chris was happy for me to talk about it. I have been clear for a few years. We all go through life thinking we are indestructible. Once I got over the cancer I thought nothing else would happen except old age may take its toll. Chris, being younger than me, has always been healthy, never drunk a lot, never smoked. I thought we were doing OK and then bang.

“The frustration is hard – not knowing what to expect.”

Tommy, who is full of praise for the NHS care both he and now his wife receives, says: “PSP is described as a progressive disease – I describe it as an aggressive one. You focus on the fact that something may come up, something will give us a miracle cure.

“Our Hospice in Taunton tells people to make the most of today and that’s a good theory.”

My mum is in….well we dont know wat stage of PSP?? She is very ill,no speach,communication,movement nothing,she is in a home now,its so sad& upsetting for us & especially my 88 year old dad who cant understand seeing his wife of over 60 years apart from him & suffering from this vile illness.

Tricia, you are spot on. PSP is a VILE disease which takes everything away. However it can not take away our memories of how our loved one was before. Please try to hold on to how your mother was pre-PSP. That was the real person and I’m sure she would want you to focus on the happy days you all shared together. This brings you my best wishes and a sympathy hug, Julia

Really moving story, my mum has PSP and is deteriorating although we don’t know what stage she is at. We think she has had this for about 4 – 5 years now Every new doctor you see you have to go through the disease and explain it all to them as most of them have never heard of it. My dad is in remission from prostate cancer, both cruel diseases. My dad is my mums main carer and its so hard on him but he is an absolute saint. Its such a shame that they are in the prime of their life and they are unable to do all the things they wished for and worked so hard for all their lives. Tina

I hear you. My dad was diagnosed with PSP in August 2007, mum with Ovarian Cancer in October in 2007. We lost mum the following October and Dad in Feb 2011. Mum was only 67, dad was 71. Yes, it’s crap and stripped him of so much so quickley no matter what we did.to prevent or maintain his abilities. There is help out there, don’t say you are managing….because nothing gets offered then. Dad ended up with a full time live in carer after mum dad (his choice to stay in his own home). Never knew such a thing existed. Use every minute you have with them to visit, sit and listen and share stories and feelings. It helps in the end. Good luck
Michele